Get Involved
By becoming a helper
The RTS Support Group is able to provide support and information to its members through the voluntary work of the committee and help and assistance offered by a generous network of helpers.
The charity’s logo was created by a graphic designer called Rayne, the cousin of a committee member who generously offered her expertise and time at no cost.
This website was created with content from committee members and medical professionals, but was made possible due to the technical expertise of Gideon, a digital marketing expert who gave his time and knowledge to guide the project, provide advice and bring the necessary additional technical know how to create a great result.
In both of these cases, our friendly network found out that we were in need of some help and offered their skills and technical capabilities, but just as importantly, they gave us their time.
If you have a little free time, or skills you think could be of use to the charity in any way, we would love to hear from you. Are you interested in social media, good at organising events, or a whizz with IT? Do you have legal expertise which could be useful to other members or have you got experience of fundraising?
We are a friendly and welcoming team. Get in touch with us by emailing info@rtsuk.org.uk.
By participating in research studies
Parents and caregivers of individuals with RTS are invited to participate in the BEOND survey.
The research is funded by the Cerebra Network where researchers will be using the wealth of data collected in the BEOND study to address the concerns of families of people with neurogenetic syndromes.
Participants will be asked to respond to a variety of questions about behaviour, wellbeing, emotion, cognition, and health, and the information provided will also provide more understanding of access to support, service use, and family wellbeing.
Read more about the PhD work here.
This ambitious survey will be repeated several times over the next few years and our hope is that many families will choose to take part at multiple points, so that we can see how responses change over time and get a much better insight into RTS development at different points during an individual’s lifetime.
Families who complete the survey will receive individualised feedback reports to put the information back into your hands, as well as being entered into a prize draw.
Learn more and access the survey via the link below:
https://www.cerebranetwork.com/beond-rts
By fundraising
The Support Group is run almost entirely on the donations of sponsors. If you are fundraising, you can deposit money raised via the website via the button IN PAGE HEADER.
The money raised is used to fund or subsidise conferences and outings for RTS Support Group members.